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EDS, mild optic swelling and brain lesions
Posted: 16 August 2018 08:27 AM   [ Ignore ]  
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Hi all
I’m hoping someone might be able to help me!  After years of pain was told I had EDS type 3, I was relieved and started to manage myself!  Then I had a migraine type aura in my eye that didn’t go away, long story short, was told I had mild optic swelling, I still have the disturbance in my eye and was told it may never go.  Brain scan revealed ‘a number of subcortical WMH’ and I’ve now been seen by a neuro and an optho-neuro. Both say they don’t know why I had the optic swelling, but all test rule out MS.
I have had migraine with aura since I was a child and they have always been debilitating.  My questions are, can the migraine cause the lesions and can EDS cause the dizziness I experience? (have profuse sweating since I can remember, Dizziness that makes me have to sit down, gastro problems) Before this I had double vision a few years ago for 24 hours.

Thanks xx

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Posted: 23 August 2018 11:25 AM   [ Ignore ]   [ # 1 ]  
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Please read Dr. Diana’s book if possible. It explains so much. You might be experiencing autonomic dysfunction (some type of dysautonomia). The optic swelling could be caused by high intracranial pressure. Diamox is the suggested drug for this. Search this forum for this and you’ll get a lot of good information. Not a lot of activity is generated here nowadays, but Dr. Diana try’s to pop in and give suggestions. She opened the POTSCARE center in Texas and is helping people get their lives back. Check out that website too. Lots of good info. Also, you might want to join a couple of the facebook EDS pages. A couple of really good ones with loads of people very experienced in the trio of EDS, Dysautonomia & MCAS. Good luck to you. Hope you can start feeling better soon.

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Posted: 06 September 2018 09:52 AM   [ Ignore ]   [ # 2 ]  
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Thank you for your reply x

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Posted: 17 September 2018 12:15 AM   [ Ignore ]   [ # 3 ]  
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Not a great deal of action is produced here these days, yet Dr. Diana endeavor’s to fly in and give recommendations. She opened the POTSCARE focus in Texas and is helping individuals recover their lives. Look at that site as well. Heaps of good information. Likewise, you should need to join two or three the facebook EDS pages. A few great ones with heaps of individuals exceptionally experienced in the trio of EDS, Dysautonomia, and MCAS. Good fortunes to you.

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Posted: 02 November 2018 10:26 AM   [ Ignore ]   [ # 4 ]  
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